May 23 - 25, 2022
ELSI in epigenetics: Indigenous, national and global perspectives
- Kendal Evie, Swinburne University of Technology
- Baynam Gareth
- Ferdinand Angeline
Advances in genetic and epigenetic testing carry with them a plethora of ethical and legal challenges. One of the major clinical applications for this field is in the area of personalized or precision medicine, including targeted cancer treatments. However, both testing and the translation of results into meaningful therapeutic options are currently unequally distributed, with marginalized communities disproportionately experiencing harm from genetic studies, while also experiencing fewer benefits from research due to barriers in accessing personalized medicine and lack of representation in reference databases. There are also broader resource allocation concerns when comparing outcomes for citizens in countries with privately or publicly funded high technology care, versus low resource settings where even basic health needs remain unmet. Where emerging genetic and epigenetic technologies should fit within this paradigm remains an open question. The COVID-19 crisis has highlighted many disparities in healthcare resourcing across the globe and ongoing justice concerns regarding access to vaccines and treatments. However, it has also demonstrated the need to continue genetics research, despite the high costs involved. This symposium considers fundamental issues of health justice as they pertain to genetic and epigenetic research, testing and treatment, with a particular focus on pursuing equitable distribution of the burdens and benefits of this research across diverse populations.